I have been a writer for the New Orleans Moms Blog for seven months. I have been putting off writing this post since I joined the blog because it deals with one of my biggest fears: the fear that I will lose my vision and not see my son grow up. However, I have found myself wanting to reference what happened to me in other posts, so I figured it was time to share my story.
Losing My Vision 12 Weeks After Childbirth
In June 2013, twelve weeks after I gave birth to my son Ben, I began to lose the vision in my left eye and was diagnosed with optic neuritis, swelling of the optic nerve. The most common cause of optic neuritis for a woman in her thirties is multiple sclerosis (MS), so I was admitted to the hospital for testing. My MRI came back negative for MS, and I was put on a heavy dose of IV steroids to reduce the swelling in the optic nerve.
Despite the steroid treatments, I continued to lose sight in the eye. After a week, I was completely blind in my left eye and was told that my vision might not return. Then, my neurologist told me that there might be swelling in my right eye as well. Until that point, I had stayed positive, but the prospect of being completely blind sent me into a very dark place. We didn’t know what caused my optic neuritis, so what if my doctors couldn’t figure out a way to stop me from also losing vision in my right eye?
Every day, I would just hold Ben and stare at him, trying to capture a lifetime of images of his face in case I was going blind. I cried throat-clenching, head-dizzying tears imagining a life where I didn’t know what my son looked like. As all moms know, your baby at 12 weeks often looks nothing like the child and man they become. Thankfully, after testing, there was no swelling in my right eye. Weeks later, the vision in my left eye returned partially. There is scarring on my optic nerve, so my vision in that eye is permanently damaged. I wear glasses, but they don’t improve my vision. They are just for protective use (like goggles) to prevent anything (mainly, Ben’s little fingers) from damaging my “good” eye.
The Misdiagnosis That Rooted My Fear
Because of the higher risk I have for developing MS due to the optic neuritis, I undergo annual testing to check for signs of MS and other autoimmune disorders. This past June, my (former) neuro-ophthalmologist misdiagnosed me with a rare autoimmune disease called Neuromyelitis Optica (NMO). With NMO, your body’s immune system attacks your optic nerves and spinal cord. It can lead to blindness and paralysis. Thankfully, when my husband and I met with my neurologist the following week to discuss my treatment options, he discovered that my (again, former) neuro-ophthalmologist had made a mistake, and I had actually tested negative for NMO.
The five days when I thought I may face blindness and paralysis were the worst days of my life. Before I describe the fear I felt about the diagnosis, let me first say that I know I would have come to accept the diagnosis over time and that I know my life wouldn’t have been all doom and gloom, but at the time, I was in a severe depression. I couldn’t eat. I couldn’t sleep. I just couldn’t stop imagining the worst case scenario – picturing myself blind and paralyzed from the neck down. I pictured the struggles my family would face. I pictured myself lying in the darkness, unable to see or move, waiting and wanting to die. And I imagined myself becoming a chore Ben would have to check off his list: do homework, take out the trash, go sit and talk with Mom. Because what if the worst case scenario happened sooner rather than later? What if it happened before Ben really got to know me? Before he was old enough to make lasting memories of our happy times together?
Not a day goes by that I don’t thank God that my diagnosis was a mistake (and that I don’t pray for those who weren’t as fortunate as me), but it shook me to the core and made my fear seem more real.
And then the “Good” Eye Became Not So Good…
Macular degeneration runs in my family, and within the past few months, I have developed floaters (dark spots) in my right eye, AKA my “good” eye. It’s like having flecks of pepper in your vision that move along with your eye so they are always in your field of vision. They are distracting and a constant reminder of what I am so afraid of losing.
Being a Worry Wart
As a mom, I worry off and on about a lot of things. I worry about serious things like death, disease, and pain. I worry about less serious things like why Ben won’t eat his veggies or what school he’ll get into. But the thing I worry about EVERY day is that I will lose my vision. Without fail, I worry that something else will happen that will take away my sight and prevent me from seeing Ben grow up. BUT every day I am also grateful for the vision that I still have. I am grateful that I am still able to see my baby boy smile. I am grateful for the joy my son brings me. He is certainly the best sight imaginable for these sore eyes.
Thank you for bravely sharing your story! This is an amazing post. I know there is nothing I could ever say to make you feel better about the inevitable loss of your sight, but you are a great mom and are doing a great job enjoying every minute with your son. Bravo!
Love you, Marie.
Marie, thank you for sharing your story. You told about your initial reactions to a terrible event in your life. However, you also showed your courage and hope for the future. You are a very brave woman and a wonderful mother.
so sorry for your current difficulties. Who was your neuro-ophthalmologist? Dr Marie Acierno at the LSU Eye Center is great. Maybe she could help.